10 Month old boy with Quad CP... Help!

Amber - posted on 06/22/2012

Tracey, Oh do I feel your pain. My husband and I took a foster baby last year that we were told was blind, deaf, had COPD, was born at 24 weeks and had half a brain. We are both medically trained and knew that no one else would take him. We thought we were only going to have him until I went back to work in the fall (school nurse). Needless to say we still have our handsome little boy AND his baby sister (we got to bring her home for the NICU). No one had picked up on this poor little guy having CP. The day we brought him home I told my husband something was wrong and I thought he had CP. He does have CP from the prematurity and a very bad brain bleed. He also has been classified as blind. He is not deaf or have COPD. He has always been happy playing for long periods alone because that was how he was been taken care of at his other home. He was not being fed or cared for. I could go on and on, but I thought I better give you a little bit of insight. He is still at about a 6 month level. He is not sitting up or doing anything like that. He has started botox injections and it has made an amazing difference. He rolls around his room now. I am confident he will get there, but it is ever so slow. I was so frustrated today because he didn't want to do anything but be held. He is nearly two so it is hard to hold him especially when he gets so stiff. I too feel like I neglect my other children at times. We have two boys (8 and 7) who are wonderful helpers, but this has been a rough year for them too. The baby sister though premature is doing very well. She is actually pushing him along. He babbles with her, smiles when she gets in his face etc. I have no idea what the future holds for us. I, too am looking for guidance, knowledge, experience, ideas for our son. We are going to adopt him and his sister. He is a lot of work, but so very worth it. If anyone could offer suggestions I would be most grateful. One question I do have is when can we get him a wheelchair? He is getting more difficult to carry due to the stiffness. Thank you so much!

Rachel - posted on 05/01/2012

I do not have disabled children but i do take care of some in a group home. First thing is breath take time to do that and try to look into some toys with lots of colorful lights as they will be great since he can not hear. also He might benefit from some form of therapy maybe even pool therapy. i am not a doctor or an expert but these are just things that i have found that work for some of the kids i take care of. Also if he is small enough maybe a swing would work with the motion the kids i take care of also like to swing. good luck and i hope you get some help with your little man. Also maybe your partner can take Oscar for alittle while you take max to the park or something. Good luck